Having fibromyalgia for almost 21 years, I have heard an array of comments about fibromyalgia, from positive to negative. Yet, over the years, I’ve noticed certain comments are reoccurring. While I understand that most people don’t know that much about fibromyalgia, there are still many misconceptions.

1. “You don’t take painkillers, so you must not be in a lot of pain.”

As odd as it sounds, I’m allergic to all over-the-counter painkillers, as well as multiple prescription painkillers. I was diagnosed with fibromyalgia before puberty. But, when I began puberty, my pain became unbearable. To deal with the pain, my doctors experimented with multiple treatments plans, with both over-the-counter and prescription painkillers. Eventually, I started to have allergic reactions to these treatments. They quickly became severe anaphylactic reactions. Because of the multiple serious allergic reactions, I had no choice but to turn to alternative pain treatments.

Since fibromyalgia patients experience pain on a spectrum, everyone can tolerate a different level of daily pain. Growing up with fibromyalgia and unable to take any painkillers, I grew a custom to tolerate a high level of pain. I had no choice. Though this has helped me to function with high pain levels, it has made it difficult for others to understand my high pain tolerance. This has led others, including doctors, to think that since I’m not bent over in pain and on painkillers, like some fibromyalgia patients, I must not be in a lot of pain – or even have fibromyalgia. Just because I don’t fit the typical appearance of a fibromyalgia patient, that does not mean I’m not in a lot of pain.

3. “If you can dance, then you must not have back issues.”

As someone who loves to dance, I was heartbroken when I had to stop dancing altogether because of my fibromyalgia pain. But, through the recommendation of family, I found belly dancing. Since belly dancing focuses on flexibility and is less demanding on your body than other dances, like jazz tap, I can dance and not have to worry about having issues with post-dancing pains. As an added bonus, both my doctors and physical therapists saw it as a great form of exercise for me. Though dancing with back issues can be challenging, that does not always mean you can’t dance at all.

4. “It’s all in your head.”

Unfortunately, this is the most common criticism about any invisible illness or chronic illness. Though I’ve grown to accept that not everyone is going to believe that fibromyalgia exists, it only becomes a concern of mine when the comments come from medical professionals. I’ve had pediatricians, pain specialists, and even two school nurses, try to tell me what I felt was not real. This is concerning because it not only delays the correct treatment for someone who needs it, but it also makes the person hesitant to seek proper treatment. It’s bad enough dealing with this as an adult, but it hurts twice as much when you’re a child. You become afraid to speak up about anything in your life, whether it’s your physical pain, or being bullied at school.

5. “You don’t have Fibromyalgia, you have…”

This, by far, is the most frustrating comment for me to deal with. It bothers me more than, “It’s all in your head.” While I appreciate anyone who is trying to help me, I don’t like people trying to diagnose me, especially when they have little to no knowledge of my medical history. I’ve had people from a massage therapist to a manicurist try to diagnosis me. The most common illnesses people try to diagnosis me with are lupus, Lyme disease, and arthritis.

Despite telling people about the multiple verifications of my fibromyalgia diagnosis, by multiple specialists, including a neurological psychiatrist, and tests (both blood and physical) ruling out other chronic illnesses, many still insist on diagnosing me. While I don’t mind others sharing their similar experiences and/or their loved one’s experiences, I don’t want others to tell me what I do or do not have.

While fibromyalgia symptoms can be challenging to cope with, the misconceptions can be far more challenging to deal with. For those of us with fibromyalgia, the best thing that we can do to deal with the misconceptions is to be informed about fibromyalgia. You cannot dispel the fibromyalgia myths if you don’t understand what fibromyalgia is. Though we are not all doctors, we can be informed about what we have and how to help ourselves. Because the best advocate for yourself is you.